Hello! I know this a late reply. I hope you have received help and your son is doing better. But, in case you have not I want to share this information. Doctors Erin Murphy and Gregory Stanley at Sanger Heart and Vascular in Charlotte, NC performed bilateral vascular stent surgery on my 18 year old daughter Tuesday 7/23/19. The procedure took 5 hours and they basically recreated the ivc. We found out in March, 2019 that my daughter was missing her inferior vena cava below her liver. We saw the Asst. Chief vascular Dr at Duke who told us matter of factly nothing could be done and that my daughter’s body had accommodated for this. However, a family friend connected us to Dr. Murphy (704) 667-3840.
My daughter could not walk or stand long periods of time, her feet and toes would turn blue and she would often be winded and just got worse all of a sudden. She had played soccer for 8 years! In January she became very sick and has since been diagnosed with mixed connective tissue disease an autoimmune disease. She was extremely fatigued and began passing out numerous times a day. The missing ivc was an incidental finding on an MRI ordered because she couldn’t feel her lower extremities and due to the bluing of her feet and toes. Hard to tell what was causing what...but she takes plaquenil for MCTD, B12 and iron and started getting better mid-May. However, her legs hurt and still couldn’t walk or stand for any period of time. We elected to do the surgery in hopes of improving her quality of life and to help the numbness feeling in her legs and bluing of her feet and toes. Dr Murphy has authored many publications regarding atresia and occluded ivc.